Sharing life with a gluten-intolerant person – the perspective of close relatives
Version of Record online: 5 SEP 2007
Journal of Human Nutrition and Dietetics
Volume 20, Issue 5, pages 412–422, October 2007
How to Cite
Sverker, A., Östlund, G., Hallert, C. and Hensing, G. (2007), Sharing life with a gluten-intolerant person – the perspective of close relatives. Journal of Human Nutrition and Dietetics, 20: 412–422. doi: 10.1111/j.1365-277X.2007.00815.x
- Issue online: 5 SEP 2007
- Version of Record online: 5 SEP 2007
- burden of dietary restriction;
- critical incident technique;
- next of kin experiences
Background Several studies indicate the importance of social support in the case of chronic disease.
Aim The aim was to explore dilemmas experienced by close relatives living with a person suffering from coeliac disease, and to describe the strategies they used to deal with these dilemmas.
Methods Twenty-three informants were interviewed. A systematic inductive qualitative method, the critical incident technique was used.
Results Disease-related worries included having bad conscience about not being affected by the disease, experiencing anxiety and witnessing the vulnerability of the affected relative in social situations. Dilemmas related to manage daily life were connected with increased domestic work, restricted freedom of action and the diseased person’s preferential right of interpretation of health risks associated with the coeliac disease and deviations from the diet restrictions. Dilemmas related to disturbances in social life, concerned lack of information, knowledge and understanding. Different strategies were described to manage daily life.
Conclusions Close relatives experienced a variety of dilemmas that affected the situation of the whole family. The role of relatives in handling the coeliac disease with the diseased person in the everyday life might be underestimated, and to provide relatives with better knowledge regarding the disease might improve the situation also for patients.